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Date: 29.01.2015
From: Colin W

Subject: starting new biologic

was 12 months ago I endded up in hospital for 3 weeks , since then been on high dose steriods & started Tocilizumab in april but had last infusion 4 months ago because of problems with my legs ie: leg ulcers & cellulitis

seen consultant today & he has put me onto Rituximab & will start it in next few weeks , just hope at last I will have a frug that works for me
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Date: 29.01.2015
From: SleekFox (bsk)

Subject: Re: starting new biologic

Best of luck Colin. I hope it works for you. I'm waiting for approval for Abatacept. No news yet.
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Date: 29.01.2015
From: Colin W

Subject: Re: starting new biologic

hope they let you have it , know some of the biologics you had to be RF positive which seems totaly unfair , hope they let you start the drug as you been through the wars as well
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Date: 29.01.2015
From: SleekFox

Subject: Re: starting new biologic

Thanks, Colin. They have to get permission because I refused Rituximab as it's not so effective for sero-ve and I've had such bad reactions to the anti tnfs. They also prescribe it with methotrexte, which I can't take anymore so my rheumy is not sure they will agree to fund it. I should find out in a couple of weeks. To be honest, I don't hold out a lot of hope, given my past record on these drugs.

Best of luck with yours!
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Date: 29.01.2015
From: Julie

Subject: Re: starting new biologic

great news Colin, How are you in yourself? lets hope new ones work for you.

I am finding Tocilizumab okay but I have had to stop mtx and plaquenil because my neutrophils dropped. Not sure what that means and I have given up looking up things cos I scare myself. Let us know how you get on with your new drugs.
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Date: 29.01.2015
From: Clare

Subject: Re: starting new biologic

Good luck with the new drug, it's so hard trying again & again such a long process.
I was allowed abataceot on its own as I can't tolerate methatrexate. It was slow to work took a good 4 months & was very gradual but has been really good for me. My esr was over 100 now down to 25 after 6 months & I was getting so many steroid shots they were only lasting a couple of weeks at a time. No steroids since June & in much less pain & more importantly as I have young children I am more mobile again. Keep pushing, this was after 2 failed tnf & I was giving up hope.
Clare
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Date: 29.01.2015
From: sleekFox

Subject: Re: starting new biologic

That's really helpful to know, Clare. I will push for it. Thank you.
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Date: 29.01.2015
From: Lois (marlene)

Subject: Re: starting new biologic

Hi Colin Great news wish you luck with new drug. You deserve some relief as this last year has been very rough on you. Take Care and Chin up.
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Date: 02.02.2015
From: Deborah

Subject: Re: starting new biologic

Hi Colin,
Do hope the new drug helps you.
You've had a bad time of it.
Will be thinking of you.
Let us know how you get on.
Best wishes Colin.
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Date: 16.02.2015
From: Colin W

Subject: Re: starting new biologic

starting Rituximab tomorrow , told it will take 6 hours , just looked at the side effects but with so many people doing well on it , got to be worth the risk
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Date: 16.02.2015
From: Sleek Fox

Subject: Re: starting new biologic

Good luck with it, Colin. I didn't want to have it but it's not very effective for sero negative RA so didn't think the risk/benefit ratio very good fro me.
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Date: 16.02.2015
From: Suz

Subject: Re: starting new biologic

All the best Colin, hope it helps you I did have it my self 2 yrs ago and it does help get rid of the extra B cells producing inflammation.
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Date: 18.02.2015
From: Julie

Subject: Re: starting new biologic

How did infusion go Colin? Did you have any side effects while it was being done? Keep us informed of your progress.
Julie
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Date: 18.02.2015
From: Sleek Fox

Subject: Re: starting new biologic

Hope it went well, Colin.
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Date: 19.02.2015
From: lois

Subject: Re: starting new biologic

Hi Colin, just to say hope all goes well and you feel the benefits soon. x
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Date: 19.02.2015
From: Colin w

Subject: Re: starting new biologic

Thanks guys, the infusion went okay and they let me drive home pretty much straight way

It took from 8.15 to 4.30 to do it. I felt really fine afterwards.

With Yesterday woke up fine with little pain but by noon my RA comeback with advancement. End ed up shaking and felling very cold, and every joint went mad and ended laying down and unable to move any joint, after 5 hours it started to ease a bit. No idea what went wrong and will talk to my rheumatoid nurse an
d see what she says
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Date: 19.02.2015
From: Sean

Subject: Re: starting new biologic

Hi Colin - sorry to hear about you reaction - I saw this on another website about side affects so might be quite common.. it says...

Side effects of rituximab

You are most likely to have side effects when you first have the drug. During the infusion, you may have

A high temperature (fever)
Chills and shivering (rigors)
Feeling sick
An itchy rash
A headache

About half of the people treated with rituximab have a reaction to it. About 1 in every 20 people treated will also have

Wheezing
A drop in blood pressure

These side effects are most likely to come on in the first 2 hours of your first dose

_____

Hope you feel better soon! Hopefully a reaction like this shows that it is doing something.
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Date: 19.02.2015
From: Sleek Fox

Subject: Re: starting new biologic

I hope that wears off, Colin. Did you expect any side effects from the infusion?
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Date: 20.02.2015
From: Colin W

Subject: Re: starting new biologic

had looked up some of the side effects because wanting to drive home , almost 13 to park at the hospital , that is just so wrong they let a private company run it & charge so much

the one thing that was mentioned is that you feel tired and fluey for a few days , do feel pretty tired but not fluey , I think my problems may be
the steriod infusion they give you first & had a crash after it worn off , I had to see the nurse about a dressing on wednesday & got very cold & took hours to warm up again , laying down with bed warmer on helped , been taking 35mg a day tablets & think the ones I took in that morning did nothing

one thing they do test for is a A drop in blood pressure which can be a side effect from the infusion , they start the drug very slowly over first couple of hours
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Date: 20.02.2015
From: lois

Subject: Re: starting new biologic

Colin 13 to park what a disgrace. They are just fleecing sick people and they should
be ashamed of themselves. Heartless souls.

Colin I truly hope all goes well for you you deserve a break and Mrs Colin of course. Take care and keep that chin up xx
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Date: 21.02.2015
From: Sleek Fox

Subject: Re: starting new biologic

There's a campaign against parking fees in hospitals. If you are receiving treatment you should be exempt, in my view. Have you talked to the rheumy department about that?
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Date: 21.02.2015
From: lucy

Subject: Re: starting new biologic

Good luck with the rituximab Colin, I hope it works as well for you as it does for me. (although I am mad at myself for falling and needing a joint replaced in the hip) I just hope it doesn't cause any major problems.

It can take a while for the rituximab to work but when it does it is well worth it.
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Date: 08.03.2015
From: Colin W

Subject: Re: starting new biologic

quick update on my rituximab infusions

the day after the first had a reaction but think it was more to do with the steriod infusion they give first & being on high dose steriods , also the day after my leg opened up because of fluid build up , they been treating me for leg ulcers for several months so endded up with this leg in compression bandage

week later they were still not happy with my leg & gave me penicillin for 7 days & thinking I wont be able to have the second infusion which are two weeks apart , got told to turn up early & see one of the rheumatology doctors for them to decide if I could go ahead with the infusion

showed them a photo of my leg as it was still in bandage & she said my CRP before the first infusion was 78 & had come down to 26 so they was pleased , any second infusion went ok & not the problems I had with the first one , do feel a bit better after starting this drug but not sure if its the steriod infusion or the rituximab
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Date: 08.03.2015
From: Julie

Subject: Re: starting new biologic

Hi Colin, your crp has really come down, hopefully after next infusion it will be even less. If your inflammation levels drop your ulcer will maybe heal better. My mum had leg ulcers and whenever she had cold or her arthritis was bad the ulcer was worse when arthritis settled the ulcer healed a bit more.

My crp is now 0.55, which is brilliant for me as mine was over 200 when I started Toc.

Got a terrible sore throat at minute don't know whether to go to g.p. or to just see if my own immune will sort it out. This is one of the problem with this illness you never know what your body can cope with any more.
I hope your future infusions work well for you Colin and life gets a bit easier.
Julie
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Date: 08.03.2015
From: Colin W

Subject: Re: starting new biologic

hi Julie , on Toc my CRP was about the same as yours , the problem was that most my joints remained swollen for some reason , my next infusion will be in 6 months so I am realy hopeful this drug will work & can get my steriod usage down to a maintainance level

pleased Toc is working for you
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Date: 08.03.2015
From: rhona

Subject: Re: starting new biologic

Hi Colin, That's good to hear. It can sometimes take a few months to get the full benefit. You may be able to get off the steroids altogether. Good luck with it, you deserve a break.
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